Patient Support Groups

Where to find support

There are a number of organisations and community networks across Australia that provide practical and emotional support to people with skin conditions, their carers and their families.

Patient Support Groups

Albinism Fellowship of Australia

The Albinism Fellowship of Australia (AFA) is a national, non-profit organisation established in 2005. The fellowship is run by volunteers who all have been personally touched by albinism in some way. The AFA’s key purpose is to provide support, education and fellowship to those with albinism, parents of children with albinism as well as their families and friends.

Australia Alopecia Areata Foundation Inc

Australia Alopecia Areata Foundation Inc. (AAAF) was founded in 2010 with the purpose of improving the lives of people living with Alopecia Areata and their families. We have three missions; to provide support to those with all forms of Alopecia Areata, and their families; to inform the public and create awareness of Alopecia Areata; and to support research into a cure or acceptable treatment for Alopecia Areata.

Australian Gorlin Syndrome Mutual Support Group

The Australian Gorlin Syndrome Mutual Support Group is composed of people with different professions and life experiences but we have this genetic condition in common. Our aim is to share our stories and to keep up to date with the latest research and treatments being offered.

Coeliac Society of Australia

Coeliac Australia is a national not-for-profit association supporting people with coeliac disease. Coeliac Australia provides a framework for the states to work together, share resources and fulfil its vision – To enhance the quality of life of people with coeliac disease and those medically diagnosed as requiring a gluten free diet for life and to support research towards a cure or other ethical forms of treatment.

DEBRA (Dystrophic Epidermolysis Bullosa Research Association) Australia

DEBRA Australia Ltd. is a volunteer based organisation that assists in improving the lives of children and adults living with EB, the debilitating and sometimes fatal condition, by providing necessary support services, medical supplies, aids and equipment, support services, assistance with transition to independent living and research focusing on different aspects of EB.

Eczema Association of Australasia

The Eczema Association of Australasia Inc, a national non-profit organisation, supports and educates eczema sufferers and carers, along with the wider community, in all aspects of eczema and its impact with the aim of helping them manage their skin condition.

Hands to Hold Ltd – Allergy & Eczema Support

Hands to Hold Ltd – Allergy & Eczema Support aims to provide support to individuals and families experiencing a significant impact to their quality of life as a result of Chronic Allergic Diseases and/or Chronic Skin conditions.  Our goal is to reduce social isolation, improve quality of life and overcome social and other barriers created these conditions.

Melanoma Patients Australia

Melanoma Patients Australia (MPA) is an independent, not for profit organisation dedicated to supporting and representing those affected by melanoma. We provide many services to assist people on their journey with melanoma including: counselling, education, peer to peer connections and support groups both online, on the phone and face to face. Our vision is to reduce the impact of melanoma on all Australians.

Nevus Support Group

Nevus Support Australia is Australia’s first not for profit support group and charity, providing information and support to individuals and families affected by (CMN) Congenital Melanocytic Nevus. We support research into pigmented skin conditions and associated conditions including melanoma, neurocutaneous melanocytosis (NCM) and hydrocephaly.

Psoriasis Australia

Psoriasis Australia strives to assist people with psoriasis, or those wanting to know about psoriasis, by providing beneficial information and support enabling educated decisions to be made on treatment choices and lifestyle changes.

Scleroderma Australia

Scleroderma Australia aims to promote scleroderma awareness on a national basis, disseminate information about scleroderma, fund and coordinate scleroderma research and advocate for improved and ongoing support for scleroderma patients

Vitiligo Association of Australia (VAA)

The Vitiligo Association of Australia (VAA) is a not-for-profit association founded in September 2010 for patient support, public education and the promotion of research into vitiligo within Australia.

International organisations

Hidradenitis Suppurativa Foundation, Inc. (USA)

The Hidradenitis Suppurativa Foundation, Inc. (HSF) is a nonprofit public benefit corporation, dedicated to improving research, education, and the quality of life and care for individuals and families affected by Hidradenitis Suppurativa (HS).

National Psoriasis Foundation (USA)

The National Psoriasis Foundation (NPF) is a non-profit organization with a mission to drive efforts to cure psoriatic disease and improve the lives of those affected.